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Date: 07.01.2018
From: paul

Subject: diagnosed with seronegative arthropathy

everybody, new to this forum and first post. Looking to see if there's anybody who has experienced similar issues to me and willing to share their experiences. I've been diagnosed with AS but it doesn't quite sit right with me (please read on)

Discomfort/pain/dullache around chest with burning souls of feet and aching calves (may not be related) - eased with rest when sitting (apart from driving) or lying down. Worse when
undertaking anything associated with raising arms or bending over, with discomfort and tension spreading to chest through ribs. Upper back and chest clicks and creaks a lot. Relief from cracking chest and back but maybe psychosomatic.


Approximately 3 years ago I was working on my house and lifted a heavy set of wooden blocks
for my flooring up some steps. I'm now 38. In hindsight, the technique and weight should have been considered. The subsequent pain the following weeks and months was that I had caused myself an injury beyond that of usual
gym-muscle ache. The pain felt as if it was all over my entire back and felt like tooth ache which got worse as the day progressed. The discomfort was also referred to my chest/rib area. At one point, I thought I had a problem with my liver/kidneys. I struggled to stand for
a short period of time as the ache got worse. I don't like to use the word pain, as it doesn't describe my symptoms too well.

I decided to visit a spinal surgeon about 2 years ago and had an MRI undertaken, which
identified inflammatory change around the vertebrae at T10/11 and T11/12.
He suggested it could indicate seronegative arthropathy and rheumatology screens should be performed. He identified there was no natural fusion or inflammation occurring in the SI joint which he thought ruled out ankylosing spondylitis (at the time). As a result, I had facet joint injections (only 1 treatment, but not effective), multiple physio sessions (not effective)
and the screen performed at the time did not pick up on inflammation in my bloods.

A year or so elapsed with little change however I had a son which has made it very
difficult to avoid the symptoms I've described above i.e. due to bending over lifting etc. The only difference is now that I know where the source of the discomfort originates (in
my mid back). I've since visited another consultant spinal surgeon who has referred me to a rheumatologist as he didn't think sufficient blood
tests were taken to eliminate AS. I'm HLBA27 negative, with no issues with ESR, CRP, rheumatoid factor, liver or renal function, FBC also all negative. The rheumatologist believes I have AS despite there not being any issues with
bloods. This is because I had a second MRI which shows there is progressive inflammation between the discs I've mentioned above. I don't
believe I have many of the issues associated with AS i.e. no pain in sacroiliac joint, hips or buttocks, no AS in family, pain doesn't get worse
with rest, I don't wake up in the night due to pain, no loss in appetite.
I do however find NSAIDs are somewhat effective but certainly don't solve the feeling as if there's something stuck in my back along with the throbbing. I have however recently had an
outbreak of eczema and psoriasis (never had this before). I do have some stiffness in the morning and feel somewhat tired (but then I have a young child). I do feel a bit better from exercise i.e. lateral pull downs but I put this down to the fact it's stretching my spine and taking off the pressure on the nervse between the discs described above. I'd be interested to hear people's opinions. I'mconsidering meeting the surgeon again and asking for further facet joint
injections and asking for a second opinion from a rheumatologist. Feel at a loss. Thanks for reading.
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Date: 08.01.2018
From: lucy

Subject: Re: diagnosed with seronegative arthropathy

Hi Paul, Welcome to the forum. I have RA so I can't really offer much advice but some of the things you have said in your post reminded me of Sean that hasn't been on for a while. Hopefully he will see your post and come on but in the meantime you could read what he has written in the (personal story section) if you click on the green symbol that says personal stories and then select a name (Sean) and you may find some similarities. He also said that exercise helps his back (stretching) Sean suffers from AS but controls it with diet.
I would suggest that you get a second opinion from a rheumatologist. Good luck
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Date: 08.01.2018
From: Colin W

Subject: Re: diagnosed with seronegative arthropathy

hi Paul , I would see a Rheumatologist , & tell them you suffer with psoriasis , if you are HLBA27 negative for AS , I would have thought they should have refered you on

I have RA for over twenty year , the drugs they will give you are the same as we take
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Date: 19.01.2018
From: paul

Subject: Re: diagnosed with seronegative arthropathy

THanks lucy and Colin, for your responses. I've got another appointment with another rheumy tomorrow so I'll see how that goes.

I'd be interested to know how long you need to abstain from bread, dairy etc to see a benefit from AS. Perhaps Sean or somebody who has tried similar diets can advise.

thanks again.
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Date: 20.01.2018
From: Colin W

Subject: Re: diagnosed with seronegative arthropathy

Paul it helps those that has some allergy to glutens , some of us has problems with fruit like Apples , Oranges , Grapes , Tomatoes & Lettuce , I am in the latter group

but I have never found a food that makes it better & tried loads of off the shelf & non of that worked

there is non a cure at the moment & trying to find a treamtent that works for you , dont sound like RA , maybe Psoriatic arthritis or AS but the Rheumatologist should be able to tell you
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Date: 24.01.2018
From: paul

Subject: Re: diagnosed with seronegative arthropathy

Thanks again Colin. It seems like there's no one stop solution for these conditions.

Turns out I have AS (confirmed by another rheumy here in Cardiff). I'm told it's not the classic case i.e. the inflamation and fusion has started mid back rather than from SI joint up. Certainly reading through the forums this whole thing is a bit of an eye opener for me. Suppose I was naiive to it and assumed athritus and similar diseases were associated with old age, if they were lucky to get old that is.

I had a cortisone injection the other day which has made a bit of a difference however sadly I think a lot of my discomfort is mechanical and not inflamatory. Biologics were discussed by my rheumy which I'm prepared to try however I have a gut feeling most of my pain is to do with the fact my discs in the t10/t11 and t11/t12 are compromised.

Hopefully some stell cell therapy can sort us all out in the near future :) here is hoping eh! take the below with a pinch of salt as it is the sun afterall (today's news):
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Date: 25.01.2018
From: Colin W

Subject: Re: diagnosed with seronegative arthropathy

hi Paul

there is not many on here with AS , Sean has it but he has not been on here for some time

the treatment is the same as RA , so we know about the drugs , the arthritis care forum may have a few more with AS

thanks for the link in the Sun , only thing I would say is dont trust to much what you read on the net , ie : on here & other forums , the daily press ie : Mail / Sun / Mirror & Express , every few weeks they have cures on there pages

trust the main charities like Arthritis Care & Research & NRAS , and the NHS pages , just be careful what you read
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